Last 24 hours of coughing have been so stressful and sad, sad, sad. Seems there is nothing that helps when it starts. So the nights are long and no sleep.
The nightmare we are in is real but when Charles passes the nightmare will only begin. Can't handle it sometimes, I am despondent.
Cuttercat
Cuttercat, you've always been there for everyone else, and now it is our turn to be with you. Take some strength from me, and keep up the good fight. You have performed wonders, and it's time to do it again 🙂
Don't be despondent, you have been beyond awesome, you just don't realise or appreciate it right now.
I agree with Ratcliffe you have been amazing, stick in there, you have done a wonderful job looking after Charles, it has been hard for you, saying a prayer for you, sending you big hugs. Yvonne xxxxx
I am so very sorry to read of the deterioration in both your husband’s condition and your sadness and epression.. As you may know, I am the one with PSP and my poor dear husband does his best to care for and help me. He is older than I am by 7 years and I know how the effort and concern tire him out and I hate to think what will happen to him when my condition worsens. He insists that we won’t need to get in professional care or nursing help so I am spending most of my attendance allowance on therapies such as yoga, pilates and massage combined with acupuncture all of which help to relax the physical tension and the resulting pain dan help me to put on a brave face so as to stop him worrying so much but the relief is only temporary and then the pretence becomes too hard and ............
I’m no saint and, when thwarted, my reactions can be most extreme and unkind and I’m not that incapacitated yet. It is all so complicated and I feel so guilty and sorry after a nasty bout. I began this post as one of sympathy for you rather then as a route to express my own frustrations: apologies and best wishes to you and to Charles.
Ann
Thank you for sharing your experiences on the HealthUnloked forum. On this way we feel less alone and have new ideas to solve the problems that are emerging.
I submit to the consideration of this forum the following ideas, without a statistical or scientific proof, but which I observe in environments affected by neurological diseases:
1) Combat the stress of the person with PSP is as important as combating depression and get a good night's rest.
2) Implement and follow with perseverance a gymnastics table that stimulates the muscles of legs, arms, chest, neck, mouth and eyes slows the progression of the disease and makes easier the necessary care for the person with PSP.
3) Combatting stress, depression and getting a good night's rest is just as important for the person with PSP as for their caregivers. In the case of the carergivers it is advisable parallel activities that interest to them as well as periodic holidays.
Ditto
I know how hard it is, cuttercat. He feels loved and thats what matters in the end.
Big hug and love, Jean xxx
Cuttercut I know what you mean. It is so cruel to watch the person you love suffer and change so much, and then be left alone to suffer again.
I know it won't make your life as it once was but we will be here for you. You are one of the special people on here. Don't forget that?
Love and hugs to you.
Marie x
Holding you in my thoughts and wishing you some sleep ~
I know what it is like to watch daily the suffering and wondering how I can go on. Really wish I had some magic words to help you through but all I can say is I am thinking of you and Charles. As you say it is so sad sad sad. Love Jxx
Difficult to know what to say Cuttercat! So terribly sad, heartbreaking! Just try and keep focused and as strong as you can. Much love to you at this incredibly awful time ❤️ X
Hi
What i find useful and it does appear to reduce coughing is to nurse rog right on his side banked in with pillows, now this is the odd bit! I raise the foot end of the bed and slightly raise the headend , it seems to stop the irritation, just waiting for delivery of a bed that has a knee raise in which i think will be even better.
Enjoy the day
Julie
Sending a pray for you and your Charles
oh dear cc, I cry for you and Charles I want to tell you "don't be despondent" but why the hell not? I just want to let you know I hear ya baby, I'm feeling your tears....
((With Many Comforting Hugs))
AVB
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Leg arched back, lower jaw withdrawn
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